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A practical guide to disseminate
EULAR recommendations to patients
Content Preface 3
Developing EULAR recommendations 4
Principles of disseminating EULAR recommendations 4
Developing and using lay summaries 5
First step: adaptation 6
o Developing an English lay version o Developing national language versions
Second step: dissemination 9
Figure 1: flow chart procedure for dissemination 12
Checklists 1-6 13
Patients are becoming more actively involved in the management of their own disease and the healthcare decisions that have to be made. This is called shared decision making: decisions about potential treatments are made on the basis of information given by the health professional and on the preferences of the patient. To make a well-informed decision, it is necessary for the patient to be provided with up-to-date information about treatment options. This includes the benefits and risks of taking or rejecting a particular treatment. It is because of this increasing need for reliable and easy to access information that EULAR develops disease management recommendations. EULAR, and in particular the EULAR Standing Committee of PARE (People with Arthritis/Rheumatism in Europe), considers it important that these recommendations reach patients as well as health professionals. EULAR has therefore made the dissemination of recommendations a priority for the coming years. Patients should be aware of the EULAR recommendations and where to find them. However, the traditional, scientific wording of the recommendations is often difficult for lay people to understand. It is important, therefore, to adapt the recommendations to the language of the patient. Moreover, it is sometimes necessary to adjust recommendations to the context of a particular country. EULAR wants to promote this process by providing English lay versions. EULAR furthermore encourages its member organisations to translate the lay versions into other languages and to disseminate these versions to patients in their own country. Also in countries that have developed national guidelines or recommendations, patient organisations should develop lay summaries and disseminate these to patients. High quality and up-to-date patient versions are needed to ensure that all people with rheumatic and musculoskeletal diseases (RMDs) in Europe are aware of the existing recommendations, and can understand them. Because patient organisations represent the users of health care, they are key players in this dissemination process. For this reason the EULAR Standing Committee of PARE initiated the development of this practical guide on the dissemination of recommendations to patients. The guide is in the first place meant for national patient organisations. Because we expect that in many cases patient organisations and health professionals will work together, we think the guide will also be useful for health professionals with an interest in promoting patient education. Marios Kouloumas Gerd Rüdiger Burmester EULAR Vice-President representing PARE EULAR President
Developing EULAR recommendations Over the years the European League Against Rheumatism (EULAR) has developed many recommendations for disease management. These recommendations are primarily developed and published to inform practicing health professionals and to improve their daily treatment routines. EULAR recommendations are developed following a standardized procedure which is laid down in the so-called EULAR Standardized Operating Procedures for the Elaboration, Evaluation, Dissemination and Implementation of Recommendations, originally published in 2004. Patient participation in the establishment of recommendations has been a key notion for EULAR for many years ensuring a broad view on the relevance of the recommendations and increasing quality, validity and usability. In furtherance of this principle, in 2011 EULAR formulated eight recommendations for the inclusion of patient representatives in scientific projects. For guidance, EULAR has developed various reference documents on patient inclusion, all available from the EULAR website. In view of implementing recommendations for the management or treatment of specific rheumatic and musculoskeletal diseases, EULAR recognises that developing recommendations is only the first step and that another priority must be set on their dissemination to all relevant parties. This priority has gained importance in recent years and is reflected in the revised EULAR Standardised Operating Procedures that were published in 2014. In this new version, the role of patients in recommendation project task forces is again confirmed and re-emphasised, and the importance of early planning of the dissemination and implementation process is underlined. Principles of disseminating EULAR recommendations This Guide presents the key EULAR concepts for managing the dissemination and implementation process and provides guidance and tools for making it happen. Dissemination refers to the process of raising awareness about the recommendations; it gives insight in the existence of recommendations and where to find them. Implementation is the process of promoting the application of recommendations; this leads to more (structural) use of the recommendations or guidelines in clinical practice. A description of the process and responsibilities is provided in a flow chart (figure 1). EULAR recognizes that dissemination can only be successful in close collaboration with all stakeholders. EULAR therefore acknowledges the important role of national patient organisations and health professionals in initiating the translation and dissemination of the EULAR recommendations to health professionals and patients. Collaboration with health professionals is necessary because they are in close contact with patients and have extended insights into the needs and concerns of patients. By health professionals we mean all people working with people with a rheumatic or musculoskeletal disease. This includes rheumatologists, nurses, orthopaedics, physiotherapists, occupational therapists, psychologists, physicians and general practitioners.
Dissemination of EULAR recommendations should be planned from the beginning and be included at the start of the development or updating of the EULAR recommendations. A dissemination plan will consider how the recommendations can be spread to different audiences using different tools and strategies. The plan includes identifying target audiences, their information needs and the strategies for dissemination of the EULAR recommendations, as well as suggestions for evaluating the dissemination process. The box “EULAR views on dissemination” summarizes the key ideas and measures for effective dissemination that EULAR is applying.
Developing and using lay summaries The key approach to disseminating EULAR recommendations to patients is the preparation of lay summaries of the original scientific text. Primary target group for patient versions are the individual persons with a rheumatic or musculoskeletal disease. A lay version is important to inform patients about what they may expect when they are receiving rheumatology care as described in the EULAR recommendations.
EULAR views on dissemination In 2014, EULAR updated its Standardised Operating Procedures for EULAR-endorsed recommendations. The following bullet points are taken from the official EULAR document and emphasize the importance of dissemination: • Implementation starts with knowledge about the recommendations. Therefore,
dissemination is the crucial first step. • A strategy for dissemination should be part of the original proposal. • The minimum dissemination that is required is the submission of an abstract to the
EULAR annual Congress and the submission of a manuscript to the Annals of Rheumatic Diseases, the EULAR journal, for consideration of publication.
• Although the content of the recommendations will not vary, the presentation, dissemination and implementation may need to be adjusted for the various target audiences (for instance lay versions of recommendations for patients).
• For dissemination purposes it is important to present the recommendations in an easy to understand way.
• A special consideration is the development of a lay version of the recommendations for patients. Ideally, this would be part of the original project, but frequently this can only be completed as a separate project afterwards with involvement of a larger group of patients.
• Another dissemination option is to send the recommendations to a high number of the intended end users, for example, rheumatologists in various countries in case of management recommendations. The rheumatologists can be asked about their agreement with each recommendation in a similar way as described for the task force members. In addition, they can be asked to indicate whether the specific recommendation will change their practice, and if it will not change their practice, is this because they disagree or because they already apply this in clinical practice. Finally, expected or actual barriers to the implementation can be listed. This will provide essential information to develop an implementation project.
• Other ways of dissemination are presentation by key opinion leaders,